In the Chemo Room: Integrative medicine

I'm in a clinical trial of a drug alphanumerically designated by its maker Genentech Inc. as MEHD7945A, as if it were a star or a galaxy.

The drug  has shown some benefit to me so far. It has reduced my lung tumors slightly, and kept other tumors stable. That, besides some moderate side effects, is the drug's benefit.

But my enrollment in the trial is a result of past chemotherapy treatments losing their effectiveness. Standard treatments no longer control the growth of tumors in my lungs and lymph nodes in my chest cavity; the new drug seems to be doing that.

But even as I take the drug and monitor myself for its effects, I have always been interested in what are called alternative or complimentary treatments for my cancer. They include diet, physical exercise, reduction of stress, spiritual and psychological exercise, dietary supplements and just about anything else someone might suggest to a cancer patient.

The suggestions can be overwhelming and an oncologist often will poo poo them as unscientific and not worth your bother.

But I listened to a 90-minute Colon Cancer Alliance webinar called Integrative Medicine: Wellness Throughout Treatment and Surviorship earlier this month and heard something I have wanted to hear ever since I began my own scattershot research of alternatives to chemotherapy.

Mary Hardy, a doctor and medical director of the Simms/Mann UCLA Center for Integrative Oncology, finally put an end to across-the-board dismissals of alternatives:

"I like to choose interventions from this arena that have scientific evidence where it is available," Hardy cautioned from her own scientific background.

She added, "The evidence base for what kind of diet, for what kind of supplements, for what kind of effects, is much smaller than it is for the chemotherapy medications that you'll be offered. But there is a body of evidence and it is growing, and when people are making recommendations for you in this area, they should be aware of this evidence, aware of these studies, and use them appropriately."

Hardy went on to share what she knew of the most-talked-about alternatives, first saying: "The best wellness plan is one that is tailored to you."

She suggested finding a knowledgeable coach to help you craft your own response to your disease, and she said to inform your oncologist of what you are doing so he or she can respond as well. Some chemotherapy drugs can be rendered less effective by certain dietary supplements.

Her basic components of a plan were simple:

• Optimize your diet.
• Exercise regularly.
• Maintain a healthy weight.
• Practice regular stress management.

Hardy's presentation -- you can listen to the whole show by clicking on the link above and then clicking on "Launch Presentation" -- was actually the second part of the webinar.

Anne Coscarelli, a clinical professor in the Department of Psychology at UCLA, opened the session speaking of the mental and emotional toll a cancer diagnosis takes on a patient, their family and their caregivers, and offering "mindful" techniques for patients to dispel fear and anxiety.

"Colon cancer, like other cancers, comes with a measure of uncertainty," Coscarelli said. "It really can change a person's life both physically, mentally and spiritually." It also can disrupt a patient's physical function, their social network, their sexual and reproductive health, their financial and work status and their spiritual and psychological outlook.

"Stress and anxiety become imprinted on us,' Coscarelli said. "They become imprinted on our brain."

She added that fears of the spread or recurrence of the disease can be spiked by news coverage of the latest medical or research developments, by surfing the Internet for more and more information about your disease, and even by anniversary dates: of surgeries or disease-free scans, or other markers in a patient's fight for life.

The webinar, jointly hosted by the UCLA Center for Integrative Oncology and the Colon Cancer Alliance, is one of a series of "Conversations about Colon Cancer" held on the CCA's website. Check it out for more information about living with the disease.

Chemo 101: a web success story

Kristin Gustafson started marketing Chemo101 even before she launched the website that keeps chemotherapy patients, nurses, doctors and caregivers abreast of the latest information available about life in the Chemo Room.

Gustafson says her Denver-based site has grown like a blogger's dream over the last year, landing a $25,000 ad schedule from Whole Foods because of the marketing buzz she created within its target audience by competing for startup funding in the Pepsi Refresh Project.

That's a fund-raising program run by Pepsi which gives away grant money to make innovative ideas -- anyone's idea, really -- into reality by winning the funds to make it happen through a contest.

KG, as Gustafson calls herself, entered Pepsi Refresh last September at the $250,000 level, but lost out to a much larger organization, the animal protector ASPCA, which was able to marshal many more voters to its cause than Chemo 101.

But soliciting votes for her project from all the people who might use it essentially put Chemo 101 in the minds of its audience even before it was available. The site launched in December, and besides her Whole Foods advertising program, KG is now averaging 30,000 unique visitors to the site per month. Like I said: a blogger or website developer's dream.

And that's as much a reason for writing about her here as the nature of her cancer-related website. Gustafson has started a small business on the Internet in the booming health-care industry which never seems to shrink even as the nation's economy falters.

So KG's business lesson is valuable to many of the readers of this blog whether they come from the blogging world, the cancer world, the small-business world, or even the politics and policy world. Chemo 101 is an example of a successful, small-business startup in a booming industry fueled by the Internet.

And Gustafson has gone about starting that business in an instinctively entrepreneurial way.

Her professional background is in human resources, having worked with health-care, and specifically oncology-related, companies in Minnesota, before moving to Colorado to work briefly with a medical-device manufacturer. She found herself drawn back to oncology and the fight against cancer, however, and so decided to start Chemo 101 as an outgrowth of what started as an HR consultant's practice.

She didn't win the Pepsi contest, so her funding came from her own savings and investments, and she was helped by a friend who volunteered his expertise not only in programming but also in sales and marketing because he had been touched by the fight against cancer in his own life and wanted to "give back" while waiting a few months to take a new professional position.

Chemo 101 was borne of KG's experience with her target audience: patients, nurses, doctors and caregivers from mostly community-based cancer clinics. "Our site is really augmenting what they do in the clinic every day," she said.  "A lot of times from the day that someone is told there's cancer, they're just rushed through the process. And the oncology nurse has fifteen people that she's trying to get set up." So a lot of patients go home from a first treatment with dozens of unanswered questions.

KG's website has the answers to many of those questions. "My idea," KG says, "was build a website for cancer patients to understand their drugs and dollars, ... a resource to understand your chemotherapy drugs, understand the different food and drug interactions, and how co-pays work, and what type of insurance you're on; what questions to ask."

But while cancer consumers were the target audience, Gustafson knew her target market for monetizing the site was big pharma, the huge pharmaceutical companies that test, make and sell drugs that help millions of people fight cancer across the globe.

"My business models started with the thought of I'm going after the big pharmaceutical companies; they are the ones that have drugs in the data base that I have built. They have branded, marketed products that we see ... advertised on TV."

Those companies' oncology products, the chemotherapy drugs pumped into patients all over the world, are the mystery meat of the cancer-treatment industry. Millions of patients, nurses  and caregivers are constantly seeking the ever-changing, latest information about drugs and their side effects in order to ease the patient's struggle to stay alive.
 
And Gustafson, through the website, keeps the information up to date. She uses what are called Food and Drug Administration-approved "package inserts" to describe the chemicals patients receive during chemotherapy. The inserts are the printed material included with any medicine sold to consumers.

But she also has a "resources" section of the site she says will be used to offer information about alternative treatments ranging from use of medical marijuana for nausea to nutrition and diet information geared to the cancer patient. That portion of the site is not yet very developed, but like any site on the Internet, Chemo 101 is a work in progress.

Nurses' desire for more nutrition information, however, is what drove Gustafson to seek out advertising from Whole Foods Market. Surveys she collected at a national meeting of oncology nurses in Boston earlier this year showed nurses ranked a desire for more information on nutrition as high as their desire for information about clinical trials.

"Wow, nutrition is really something I never thought of, and here we've got 40 percent of the nurses saying they would want nutritional information for themselves and their patients," she said. So she contacted a Whole Foods sponsorship program in Boulder and quickly signed up for the first $25,000 of revenue Chemo 101 has generated for itself.

At a later annual  meeting of the American Society of Clinical Oncology in Chicago -- "Kind of the Big Dance in oncology," Gufstason said -- "we met with just about any pharmaceutical company that sells an oncology product that you can think of" and were "walking on air a little bit" with the Whole Foods ads already up on the site.

When you are talking with pharma "Goliaths" like Pfizer or Merck, Gufstason said, "David at Chemo 101 didn't seem so small when you had a partner like Whole Foods."

KG is still working to land other advertising and sponsorship deals that carry Chemo 101 into the future of the fight against all kinds of cancers.

But her one-year fight to start the company: the pre-launch marketing campaign through the national Pepsi Refresh program; her visits to national meetings to build traffic and credibility among professionals "critical" to the care of cancer patients, her primary audience; her widening of her advertising market beyond big pharma to businesses on the periphery of the cancer-care industry; all make for text-book examples of how to build an online small business.

So, even if you don't have cancer, Chemo 101 is a website to watch.